Today I saw my neurologist. She was wonderful, her caring evident as she tried to adjust my mask so my glasses wouldn’t fog up. We talked about recent months, and it felt more like having tea with a friend than a doctor’s visit. But we still accomplished the necessary business at hand–my ongoing care as I live with the challenges of multiple sclerosis. She feels the progression is now secondary progressive and has been for awhile. That means that the nature of the deterioration is no longer due to lesions in the brain and spinal cord as much as it is damage to the axons and dendrites in nerves. As a result, the MS medication I’m on may not be very effective. Really, there isn’t a lot that can be done about it at this point…that is, in human terms. God can sustain me day by day just as He always has. She prescribed a ramp for the front door, so we can use our flex spending account if needed as we improve accessibility for my power chair in this home. She wrote a note saying a mobility service dog would be beneficial so I can get on some lists for a future dog to join my team. We compared notes about hot flashes that disturb our sleep and she told me that she uses a fan clipped to her headboard. We laughed together, empathized, and talked about dogs and husbands, and the common ground we share in this season of our lives. I left with a smile as she said I had brightened her day. She made my day pretty great as well. God, thank You for a caring neurologist and such sweet moments in the midst of this journey with MS. Thank you for Kathy, who so kindly drove me to the appointment and then stopped for produce at some great stores in Corvallis afterwards. Her fellowship blessed me. Life in this pandemic is made sweeter by time with her and others. Vicky biked over with her two adorable children and some donuts for Jerry and me. I sent her home with violas and yellow and purple flowers will grace her yard as a result.
As the world reels from the impact of the pandemic, I know that many around the globe are facing extremely stressful situations. For those who have contracted the virus, to those fighting for their lives, and to those on the front lines of this battle, these are incredibly hard times. How has your life been impacted? How are you doing emotionally, physically and spiritually?
I am hoping to write a short series of posts about helpful ways that we can respond to hard times. My graduate training is in Rehabilitation Counseling , and I used to develop and offer trainings for professionals around the NW on the topic of addressing vicarious trauma (also known as compassion fatigue) through increasing resilience. Also, living with MS and other adversity has given me personal perspective. I have gained skill at doing “HARD” things over the years. This experience also reminds me of adapting to a new culture and way of life, such as when I lived and taught at Jiangxi Medical College in China for two years. Perhaps I can offer a few Pandemic Pointers, especially when it comes to mental health.
At the moment, I am thinking about how stress impacts sleep. Tonight, I am not feeling stressed, and sleep has been reasonably good for me in recent weeks. I woke up at 2:30 am, and though I’ll soon go back to sleep most likely, I decided to try listening to some deep sleep music a friend recommended (thanks Kimberli . I’ll let you know if it was helpful. I needed to open FB to get the link she sent on messenger…I know that screens are the wrong thing for sleep and will dim the light and put the laptop far from me in a moment. But first, I decided to write a few minutes.)
Sometimes in the night watches, God encourages my heart deeply. Recently that has been the case when I am awake even for a short time. We are living in “unprecedented times” as the media so often reminds us. Around the world, many are suffering. We see images of patients in overloaded hospitals and hear interviews of health care workers faced with the anguish of this pandemic and all the suffering has brought in various places. But we also see images of nurses gathering on the helipad to do battle in prayer together, and of people in quarantine singing in harmony from their balconies. We see Christians responding to the call to help in a culture that so readily attacks them for doing what honors God. Mike Lindell, a man whose life has been redeemed by God, has rapidly transformed much of his factories into making urgently needed face masks for health care workers and others during this crisis. Because he acknowledged God’s grace in his own life as he was speaking with President Trump, and encouraged people to use this time to read God’s Word and spend time as a family, he faced vicious attacks from the media and others. We are truly in a spiritual battle as well as a fight in the physical and emotional realms. God’s Word speaks of this, and reminds us that nothing can separate us from His love.
I am so thankful that His Presence brings light and hope into my days. So thankful that “the eyes of the Lord search to and fro throughout the inhabited earth to strongly support those whose hearts are fully His.” That verse was a great comfort to me when I lived in Asia years ago and encountered health challenges or other daunting things. Lord, may my heart be fully Yours. Another verse that I treasured then and now says “as your days are, so shall your strength be.”
What are the challenges you currently face? What are the gifts of this time in your life, even in the midst of these challenges?
My friend wisely said, “Never marry someone you wouldn’t want to be quaranteened with!’ I am thankful for my husband and the sweetness of our days shared recently. During a difficult fall and winter in our lives, Jerry has really proven his love and maturity in deeper ways than ever. I am really more in love with him than ever, aware that he is our spiritual leader in our home, and a covering over me in some ways. He has been working from home and in his free time planting vegetables and building a ukelele. He has encouraged me in my walk with God and I am so grateful for him. God continues to strengthen us and enliven us to hopefully bless others during this time. Be safe, and be well. Abide in His love, whatever each day brings.
Earlier this week, the specialist I see for MS and I had a brief dialogue via the patient portal. In earlier conversations, she had encouraged me as I considered changing primary care doctors to the clinic where she works. This would be closer and simplify care. She also knew that the clinic where I have been receiving primary care has been increasingly disappointing. (The quality of care has changed a lot over the past couple of years and they are in the midst of some major changes which will compound the deficiencies in care.) When I inquired about transferring my primary care earlier, I was told which doctors were taking new patients, and that it would be fairly easy to make this change. I had felt hopeful and encouraged.
That was until I actually asked again a few days ago about transferring my care, and then I encountered a brick wall. “We are not taking any new patients with your insurance.” Not at all? I asked politely. “No, not at all.” While I understand the reasons, I felt very disappointed. When I mentioned this to the neurologist, she said she was very sorry that I encountered barriers due to my insurance and she explained why that is happening. Reimbursement is so poor that smaller clinics would struggle to keep their doors open if they accept too many patients with this very common insurance. She is an excellent doctor and I am very thankful that she accepted me as a patient awhile back. But many doctors will not. Thousands of Americans are in this same situation.
This doctor commented on our broken system and I have great empathy for her and many other caring medical professionals trying to work in this system. I also have great compassion for the multitudes of patients whose care is increasingly compromised by a system which discriminates against them by virtue of the insurance they have. If you have care, be thankful. If you long for days when the quality of care was better, I guess you had better be proactive in taking really good care of your own health because things are likely to get worse. Our medical system in this country is essentially a train wreck waiting to happen, and more trains are going off the rails.
Although they would never call it that, the reality is that rationing of care is also taking place. My primary care doctor spent most of my “Wellness Visit” explaining why she no longer needs to monitor many aspects of my health. Bloodwork that she used to consider essential is “no longer needed.” I am learning from friends who work in the medical field that this is increasingly common. If you want good health care, and you happen to have insurance which does not have fair reimbursement rates, you suddenly don’t need tests unless they are larger sources of income for the clinic. I’m not talking about wasteful tests, but ones which give essential information which can help inform treatment decisions.
When you go to the lab for some necessary bloodwork, the clinic has a computer program which will flag every test that the insurance isn’t likely to cover. So you can decline the test, or you can sign a paper saying you’ll foot the bill yourself. Even though the test I needed was because of months of bloodwork being outside of normal range (possibly due to the MS medication), I had to sign a paper saying that I’d pay for the test if and when my insurance declined. Most likely we will be gouged again. Health care premiums continue to go up each year, and the covered services seem to decrease even more rapidly.
Also, quite often now scheduling is done in a way that requires you to see the provider with the least amount of training rather than your primary care doctor. Nothing against these providers, but complex situations might be better addressed by someone with more training who knows your medical history already. So, thankfully I take good care of my health as much as I possibly can, and I have a good naturopath who assists me now and then (and my insurance doesn’t cover him at all). But I am deeply concerned about the impact of these issues for all of us. I have seen poor medical care harm loved ones. Many people think that socialized medicine is the answer. Actually I believe it is not the answer but often the source of many of the problems we are facing already. Reducing care to the lowest common denominator will cost lives, and this is already impacting the system adversely.
Insurance companies, even large mainstream carriers, and clinic administrators are making decisions about what health care is offered to people. Sometimes entire clinics or specialty areas are being closed or no longer covered by insurance companies. It doesn’t matter that lives hang in the balance when these conditions go untreated. Dollars seem to be the only bottom line, while ethics and the call to do no harm get ignored.
The dollars and insurance companies are calling the shots, and doctors who want to provide quality care are increasingly frustrated. Some are leaving the field or offering cash only services. I have great compassion for the doctors who have to try to operate in this messed up system. Their stress levels go up as they contend with administrative policies they know harm patient care. Patients with chronic conditions and people who have diseases are viewed and treated differently than they might have been before our system became so broken. I felt a bit like I had a scarlet letter on my forehead as the receptionists all looked at me as the front desk worker explained I would likely never be able to receive help from a primary care doctor in their clinic. Rejected. Not worth helping because of the insurance I have. (Thankfully my identity is found in Christ, not in this sort of thing but this conversation felt very heartless.)
I watched a movie called Living Proof (on Amazon) recently. The man who made the film has Multiple Sclerosis. He shared a story that highlights the broken system and money-oriented power structures that dominate the scene. He shared how his father (a scientist) researched diet and lifestyle changes that could help him battle this insidious disease. His mother is a nurse. When they tried to share this valuable information with the MS organization in Canada, he learned how influential big pharmaceutical companies had become. When someone has MS, if they receive one of the mainstream MS treatments, the potential income for pharmaceutical companies over the years is a staggeringly high dollar amount. Many of the medications cost many times more than the person with MS lives on per year. Thousands and thousands of dollars are made, and the Canadian MS organization is in the pocket of Big Pharma.
The movie also has an interview with a doctor who performed a procedure that has helped many MS patients. He was stopped from offering this procedure despite the benefit it had for many of those he helped. This sinister and tragic change happened because what he offered threatened the large profits made from other more “accepted” treatments, so they pressured him to stop.
When this man with MS who made this movie created a website to help others with MS learn some natural and lifestyle approaches that might help them, too, the Canadian MS organization issued him a legal order to cease and desist. They saw offering this information as a threat. Thankfully, this man had the courage to find a way to continue sharing the information. But the movie made me think more deeply about this very corrupt system which profits greatly from taking only a western medical approach to treating this disease. My husband and I didn’t sleep so well after watching the video. The truth about what is happening in health care is disturbing on so many levels.
I often try to write about encouraging things. This blog post may not be very joyful to read. I would apologize for that, but I cannot. Some of the information in this post may be controversial. If it disturbs you, it is because our health care system needs help. Many of us may encounter “health-don’t-care” rather than the quality of care we once had. I’m going to choose to be grateful for the courageous health care professionals who continue to find ways to offer quality care. Some of them do this at great personal sacrifice. (I have great empathy for doctors and other providers trying to do their jobs in an increasingly hostile environment. Health care is compromised when the doctors are hindered from doing the right thing for the patient by systems that call the shots.)
I’ll trust God to help with the rest of this, and I’ll persevere. But I might also take a careful look at whether I am simply a cash cow to the pharmaceutical industry by virtue of having MS, or whether these treatments continue to best serve my own health. Maybe God is allowing me to see and experience the disappointing realities that so many of us are encountering as we try to get basic help with our health for a reason. Maybe I can be a voice crying for reform in the wilderness of diminished care. Since economics drive most of this, not patient-centered values, I know I need to pray for others like me who are finding it harder and harder to navigate basic care needs. Even more, I want to pray for the courageous doctors and professionals who endeavor to offer quality care in a system that actually punishes them for doing the right thing at times. Thankfully my faith is in God, not in our broken system of health care which is hurting doctors and patients alike.